Our tryst with Ayurveda and our first Eczema Support Group meeting in Mumbai

In my last couple of posts I had mentioned that I was trying out Ayurveda as an option of treatment for my daughter simultaneously with the immunosuppressive medication Cyclosporin that she is currently on. She was started on Ayurveda treatment in May and it carried on during her summer holidays till the end of June. She was given a mix of medicines  in the powder form ( made of natural ingredients) and others in the liquid form. In all there were quite a few medications before and after breakfast, evening snacks and dinner, and it is to my daughter’s credit that she took all the medicines without much fuss at regular intervals.

Dietary restrictions and Ayurveda

However, the more difficult part was to live with the many and varied dietary restrictions on a daily basis.  Foods which are restricted not only include food groups like fermented food products ( curd, yogurt, dosa, idli, cheese etc) ,cold foods like food straight from the refrigerator, ice creams, cold drinks or juices but also citrus foods like tomatoes, sweet lime, lemons; vegetables like potatoes, cauliflowers, leafy green vegetables like spinach; processed foods like cakes, pasta, noodles containing maida (refined wheat flour), fish and meat, cold cuts of meat, canned foods– the list was pretty comprehensive. Due to the fact that Aiyana was on vacation and at home, we did manage to follow almost all the restrictions but it was pretty tough for an 8 year old to remember and adhere to these restrictions on a daily basis. I guess given all that she has been through in the last couple of years she has matured beyond her age and understands what needs to be done even if she does not like it at all.

But inspite of following this treatment for almost 2 months, there was no marked improvement and infact her itching became progressively worse and she was unable to sleep throughout the night. It was once again a most difficult and stressful time for all of us and most of all for my daughter. As per our follow up which was scheduled in early July, I took her back to the institute and this time she was met by their skin specialist as well. Upon hearing that the medicines had made her very itchy, he changed most of her medicines and asked us to give it some more time.

Unfortunately, by that time Aiyana was extremely uncomfortable and I stopped all the ayurvedic medicines by second week of July. After showing her to her regular doctors (pediatrician and dermatologist), she was put on a low dose of oral steroids. Infact over the last couple of years we have noticed that whenever her skin has flared up or seems to be out of control even with her regular medication and routine, oral steroids is the only medication which brings it completely under control. Even cyclosporin has not had that effect on her in the past year that she has been on that medication. After consultation with her doctors, we were advised to increase and try a higher dose of cyclosporin (along with the oral steroids) for the next couple of months to see if that made her skin stable only after which it would be decided to change her medication.

The struggle is just a part of our story

Pinteresting with Koka Tawera  Week 3

So this is where we are now, still looking for a stable alternative to her ongoing medication. We have our ups and downs and it has been a long journey for us since Aiyana was diagnosed with Atopic Dermatitis. But in the end, she is so much more than a child with eczema. Eczema and all the problems associated with it are just a part of our family’s walk through life.

There was always a risk trying out alternative medicine but I wanted to explore that option incase it proved to be a viable one for her and did not have the kind of risks associated with the side effects of the medication she is on currently. But the biggest risk in my opinion is that there is not much regulation with regards to the manufacturing of medicines. Unlike in mainstream medicines like steroids, immunosuppressive medication and other such medicines, ayurveda and other alternative medicines like homoeopathy are not that regulated. Thus I was not 100% sure about the purity of the medicine (especially since some of them were manufactured by little known Ayurvedic pharmaceutical companies in various parts of our country) and hence the efficacy and this always niggles at my mind.  I am not sure how this issue will be resolved in the near future and but this remains in my mind a stumbling block for ayurveda to become integrated with mainstream medicine. But there are ways to follow some of the simpler natural remedies prescribed in ayurveda by sourcing the natural ingredients and using them as home remedies as has been the case in many Indian families over the ages. In any case, this decision was taken out of our hands due to my daughter’s skin condition and I now look ahead in our family’s journey in dealing with eczema.

What kind of experience have you had in treating eczema with ayurveda (If any)? Please do let know your opinion on the same!

Eczema Support Group- our first meeting

I had mentioned that I was conducting the first Eczema Support Group meeting in Mumbai end of July. We finally had our first meeting early August and there were 4 of us, all mothers of children with severe eczema  residing in Mumbai who came together to share our experiences, stories, issues and most importantly our pain of watching our child suffer. Going ahead we will be sharing information and our own unique experiences in dealing with eczema, we will also have  experts talking to us on various topics associated with Atopic Dermatitis amongst other things. Incase you know someone residing in Mumbai who has a child suffering from moderate to severe eczema and wants to join our group, do ask them to get in touch with me at eczemaanindianperspective@gmail.com.

I had planned to write about some products that have been beneficial to my daughter and other children with eczema over the years but I realised that it is better if I write separately about that in my next post. Apart from natural supplements, moisturizer and creams, special therapeutic clothing (some formulated by other mothers whose children had severe eczema), there are some amazing books/CDs for children available  across the world which are immensely useful in dealing with eczema directly or indirectly by reducing the stress associated with this condition. These do much more than just provide information, they inspire and motivate children (and adults) in the face of eczema and other such difficulties. I will be putting up a post on this soon!

In the meantime, I leave you with a thought which is something that I try to live by and instill in my children-

“Happiness is not the absence of problems; it’s the ability to deal with them”– Steve Maraboli

4 thoughts on “Our tryst with Ayurveda and our first Eczema Support Group meeting in Mumbai

  1. Hi Anindita,

    Congratulations and thanks for making this website to raise awareness abougt ezcema. Your daughter is really a wonderful gift of life and a very brave girl indeed. I am a mother of five month old baby gal born in sydney. Rhea started having cradle cap and ezcema since she was one month old. Although she has mild ezcema and dandruff now but we have been having sleepless nights because of her itching. As she getting stronger she scratches herself to the point of bleeding. Currently we only use cetaphil restoraderm, burts bees baby shampoo and wash, coconut oil. She is exclusively breastfeeding. I have seen an ayurvedic dr. Here j sydney. We have been prescribed khadirarishta 2ml twice a day for her and psoria oil and nalaparamadi oil for her ezcema.
    I have been advised restricted diet. Just have not started the treatment yet. I thought I should share it with you.

    • Hi Pooja,

      So sorry for my very late reply. I was travelling the last couple of weeks and have just gotten back to my blog this week. Thank you for writing in to me with your experience. Unfortunately for my daughter the ayurvedc treatment did’nt work and finally we had to put her back on oral steroids since her itching has increased a lot after giving her the ayurvedic meds. I am also infact just about to start a restricted diet for her based primarily on the research and book by an Australian nutritionist, Karen Fischer. Her book is called “The eczema Diet” and she cured her own daughter of eczema many years back. I will be writing about the same on my blog in the near future. Take care and all the best!
      Anindita

  2. Hi dear,
    We r in same situation with our kid sai 3 yr old in USA with severe eczema which was hereditary.
    Did you read about red skin syndrome with use of steroids? Pls go thru ITSAN website. We stopped all steroids we were giving and he is now in 4 th month of steroid withdrawal only with applying pure Shea butter. There is improvement . Almost I am giving him dairy free,gluten free products.but we r giving him atarax antihistamine when itchy.

    • Yes, steroids (oral and topical) have their own issues just like any other drug. But in a case of a young child like 8 year old daughter where the eczema is very severe, we sometimes cannot wait for the natural and other treatments which may or may not work. If it was an adult we would have most probably tried with only natural treatments. However, we had tried various kinds of treatments like topical steroids, narrow band UVB, ayurveda, homeopathy (briefly) and nothing worked.Her skin condition deteriorated so much that we would have had to hospitalise her eventually, hence we went ahead with the doctor’s advice in giving her oral steroids. So it completely depends on the individual’s condition and the repsonse to medications…
      I am trying a diet tailored specifically for eczema, you can read about it in my last post-
      https://eczema-anindianperspective.com/2014/12/29/our-new-eczema-diet-and-a-heart-full-of-gratitude/

      Best wishes to you and your family, hope you son’s condition improves soon!

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